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No one should be stripped of their human rights because they are ill.
We have a right to be treated with dignity and respect. We are all
vulnerable when we become ill and enter the healthcare system. We must
make sure that laws are enforced and human rights are respected for all
people.

Karina Hansen is a 25-year-old Danish woman
with severe ME (Myalgic Encephalomyelitis). ME is a neuroimmune illness
with the defining characteristic of post-exertional malaise or
post-exertional neuroimmune exhaustion. It has been coded as a
neurological illness (G 93.3) by the World Health Organization since
1969. Cases that are severe can cause a patient to be bedridden and in
need of a carefully controlled environment in order to prevent
exacerbation of symptoms. Light, noise, and touch can all be physically
painful to an ME patient.

Karina has been battling this
illness since the age of sixteen with the help of her loving parents.
It took seeing different doctors at different institutions to receive
the correct diagnosis. After receiving treatment that made her worse,
Karina and her parents took steps to prevent this from happening in the
future. They hired their own physician and dietician to treat Karina.
Her mother, Ketty, was her full-time caregiver. Because of Karina's
extreme sensitivity to stimuli such as sound and light, her parents
moved into a trailer in their backyard during the day to allow Karina
the quiet she needed. Karina hired a lawyer and gave her parents power
of attorney to act on her behalf.

Unfortunately, in
Denmark ME patients are often labelled as having a functional disorder.
The treatment for a functional disorder includes graded exercise therapy
(GET), cognitive behavioral therapy (CBT), and possibly
anti-depressants. Testing has shown that the bodies of ME patients
respond to exercise differently than healthy people. Forcing exercise
upon people with this illness can cause a significant worsening of
symptoms. Cognitive behavioral therapy can be helpful to some people
but only as an adjunct therapy. Treating conditions such as cancer or MS
with CBT and GET alone would be considered outrageous, not because they
are bad in and of themselves, but because they in no way treat the
underlying illness. Treating ME with these therapies is even worse
because exercise can actually be detrimental to the patient.

Summary of Karina's experiences prior to her forcible removal:

In
2008 Karina was admitted to an arthritis hospital for a two-week
treatment that involved GET. At the end of this stay she could only be
active an hour a day. She was given the observational diagnosis of ME at
this clinic.

At this time Karina and her family did not
understand the concept of post-exertional neuroimmune exhaustion and the
danger that forced exercise (GET) can have for ME patients. The doctors
encouraged it as a way to get better and Karina and her family
understandably followed this advice. In 2010, Karina was again pressured
into hospitalization and once again her sensitivities to sound and
light were not taken into account. During this time a doctor wrote in
her journal that Karina had no depressive or psychotic tendencies.
Karina and her parents knew that this hospital treatment would be
detrimental to her and fought to take her home. The doctors admitted
there was absolutely no cause to keep her for psychiatric reasons and
she was able to go home. Eleven days later a well-known ME expert
examined her and confirmed the diagnosis of ME.

Because
of their past experiences, Karina's parents also had another ME expert
come in 2011 to confirm the diagnosis and to offer suggestions for
testing or treatments that could improve Karina's quality of life. They
wanted to ensure that they were doing all they could to properly care
for their daughter at home. The ME diagnosis was once again confirmed
and further supplements and suggestions were made. At this time in March
2011, a local doctor and medical officer interviewed Karina and found
her to be competent to decide her own treatment. Karina explained to
them that she did not want CBT or GET and instead chose treatment advice
from ME experts. The medical officer wrote an official document in
which he accepts Karina's decision to choose her own treatment. With ME
being diagnosed multiple times and Karina once again declared mentally
competent the family felt secure that all the steps to keep Karina safe
had been taken.

In May 2012 Karina had a surprise visit
from her GP and another local doctor. The GP had been pressured by the
Board of Health to make this visit to evaluate her mental state. Once
again Karina was declared mentally competent and could therefore not be
forced into unwanted treatment. However, they said they she would have
to have a new psychiatric evaluation in a few days. At this time Karina
and her parents chose to get her story out to the public in hopes it
might protect her. Karina chose pictures that could be used and said she
hoped it would help others in her situation. In May 2012 Karina hired a
lawyer and gave her parents power of attorney to make legal and medical
decisions for her when she could not. During this time, the Board of
Health assigned a psychiatrist to her case and he began contacting
Karina's parents asking to visit Karina. Karina is under group 2 in the
healthcare system which means she can chose any doctor she wishes and
that the government cannot assign her one. She had chosen her own
doctors and her family made it clear they did not want this psychiatrist
involved in her case. They did not understand why he had any right to
be involved in Karina's care.

This psychiatrist
continued to insist that he see Karina and pressured them to admit
Karina to a hospital, but he would not provide a treatment plan despite
written requests by Karina's parents that he do so. The ME Association,
Denmark offered to put him in touch with ME experts and have one visit
Karina. This psychiatrist refused. In the fall of 2012, Karina's parents
stopped all contact with this psychiatrist, but unbeknownst to Karina
and her parents, this doctor did not stop his involvement in Karina's
case. This doctor wrote to the Ministry for Health and Prevention asking
about the right to keep relatives from visiting members in the
hospital. He received the reply in a five-page answer that explains that
human rights have priority.

Forcible removal and systemic stripping of Karina's patient rights:

On
February 12, 2013 Karina Hansen was forcibly removed from her bed and
relocated to Hammel Neurocenter. A total of five policeman, two doctors,
two caseworkers, and a locksmith arrived unannounced to remove one
bedridden young woman from her mother's loving care. Ketty Hansen
(Karina's mother) was physically held back while her daughter called for
her to come help and repeatedly rang her bell (her way of calling for
her mother).

The anguish in that moment would be
indescribable. What an overwhelming display of force against a bedridden
daughter and her mother! Karina used her cell phone to call and text
for help. She tried to call her mother who wasn't allowed to answear.
She called her sister and father and asked for help. This was an
enormous expenditure of energy for someone as sick as Karina. Her
adrenaline must have been pumping as she sensed danger.

Later
reports showed that during this time the house and its contents, such a
supplements, medications, and the food in the refrigerator were
photographed. Presumably they were looking for evidence of neglect and,
of course, did not find it as Ketty had always received praise for her
care of her daughter by doctors who visited her home. Per and Ketty
(Karina's parents) took excellent care of Karina. In the aftermath of
this visit Per and Ketty found a note on the floor by the door. It said
"to Karina's parents. You will be contacted by a head doctor every day
at about 10:00 with information about your daughter. You may also
contact the place of treatment at this phone number xxx-xxx between
13:30 and 14:30 every day." There was no name or address on the paper.
This was the only piece of paper they received that day!

On
February 13th Karina called her mother and said "How can I get out of
here? I can't take it" and the connection was cut. That was their last
contact. They later discovered that Karina made a total of 43 phone
calls and sent 7 texts in an attempt to get help before her phone died.
Her last call was a call to the police that lasted about 40 seconds.
Transcripts have been requested but not provided.

Her family has
requested multiple time that her phone be charged for her. The response
they received is that Karina must do it herself but she cannot walk to
charge it. This shows an extreme callousness to her condition and the
extra help Karina needs because of it.

A brief review of the past year

Karina's
parents were finally informed that Karina had been taken to a
neurocenter for treatment of her "severe condition." They were told that
Karina could not have visitors for 14 days and then it would be
reevaluated to see if she could have visitors. Although this
contradicts what we now know was communicated to this doctor prior to
Karina's removal.

This original time period was then extended to 3
weeks because the psychiatrist was on vacation. Then the terms of
visitation were that only visitors who supported the treatment given
were to be allowed.

During
this past year Karina's decision to give her parents power of attorney
has been disregarded. She has been appointed a guardian by the state.
The guardian did not know Karina or her wishes prior to this. He
believes in the treatment Karina is receiving. Conversations in meetings
with the caregivers at Hammel Neurocenter have revealed a deep
prejudice against ME. One doctor went so far as to call those who
believe in ME "imbeciles."

Karina's parents and
attorney are fighting this battle in the court system. It is a long,
slow, uphill battle. Meanwhile Karina should be afforded the right to
the support of her family, the right to change healthcare providers, and
the right to have complaints treated in a swift and just manner. She
has told them "you are killing me" and she has begged to be allowed to
go home, and yet they disregard her.

They have
stripped her diagnosis of ME and replaced it with a controversial
diagnosis of PAWS (pervasive arousal withdrawal syndrome). Considering
Karina has had multiple doctors diagnose her with ME, a second opinion
by an ME expert seems to be the correct choice. Karina's parents are
asking that Karina's right to a second opinion be enforced. According to
the Danish Health Care Act, 2010, a second opinion is allowed if the
condition is severe or life-threatening. The Declaration on the Promotion of Patients' Rights in Europe states that all patients should have the possibility of obtaining a second opinion. (2.7)

A
well-known ME expert has volunteered his time to see Karina. His travel
expenses will be paid by a patient association. This seems a small and
easily grantable request in light of this situation. Karina's parents
wrote to the guardian asking to allow Karina to take advantage of this
opportunity to see an ME expert. The guardian responded saying that he
trusts the team at Hammel Neurocenter and that he believes Karina is
currently receiving the correct treatment but he said he would bring up
their request at the next meeting with the team at Hammel.

Please
join J4KH in asking that the guardian and the team at Hammel grant
Karina this right to a second opinion!

Justice for Karina Hansen is a small group of people who came together to help Karina Hansen receive the proper treatment for her neuroimmune illness, ME. We want to see her patient rights and human rights upheld.